Spina bifida
Spina bifida
Overview
Spina bifida is when a baby’s spinal column and spinal cord doesn’t form properly in the womb. This causes a gap or split in the spine. This causes damage to the central nervous system.
Spina bifida is a type of neural tube defect. The neural tube is the name for the cells that become the spinal cord when a baby is growing in the womb. These cells start out flat, then roll up and close into a tube as a baby develops. If this tube does not close completely, the backbone that protects the spinal cord does not form as it should. This often results in damage to the spinal cord and nerves. This can happen anywhere along the spine.
Types of spina bidifa
There are 2 types of spina bifida.
Open spinal defect (myelomeningocele)
Open spinal defect is the most severe type of spina bifida. It means that the baby’s spinal cord and protective membranes are outside the spinal canal, in the open. Often, there’s also spinal fluid leakage around the defect.
This must be closed very soon after birth.
Closed spinal defect (spina bifida occulta)
Closed spinal defect is less severe. It usually causes mild or no neurological symptoms. The baby may need surgical intervention later in life.
Common Symptoms
⚠️ This symptom list is for educational purposes. Having these symptoms does not mean you have this condition. See a doctor for proper diagnosis.
Medicines Commonly Used
⚠️ These medicines are commonly used for confirmed diagnoses of this condition. This is NOT a recommendation or prescription. Treatment must be determined by your doctor.
No medicines have been linked to this condition yet.
Causes
Doctors don't know exactly what causes spina bifida. But there are some things that can make it more likely for a baby to develop the condition.
Lack of folic acid
If a pregnant woman doesn't get enough folic acid, the chances of her baby having spina bifida go up.
Folic acid (also called vitamin B9) is found in foods like peas, broccoli and spinach (palong shak). It's also added to some foods, such as certain breakfast cereals.
Taking folic acid tablets can lower the risk of spina bifida in an unborn baby. You can buy folic acid tablets at pharmacies and larger shops. A doctor can also prescribe them for you.
Read more about why you need folic acid during pregnancy
Family history
If someone in your family has spina bifida, you may be more likely to have a baby with the condition.
If you've already had a child with spina bifida, the chance of having another child with the same condition is higher.
If spina bifida runs in your family, your doctor will most likely prescribe a higher dose of folic acid for you. Ideally, you should take it:
- before you become pregnant
- for at least the first 12 weeks of pregnancy
Diagnosis
Spina bifida is often picked up during the routine pregnancy scan done around the middle of pregnancy, usually somewhere between 18 and 21 weeks.
That said, it is not always found before birth. In some cases, spina bifida is only diagnosed after the baby is born.
Treatment
Some medicines are linked to a higher chance of having a baby with spina bifida. These include valproate and carbamazepine, which are used to treat epilepsy.
Read more about the risks of taking valproate medicines when pregnant
If you are worried that your medicine may raise the risk of spina bifida, you should speak to your doctor:
- before becoming pregnant
- as soon as possible if your pregnancy was not planned
Stopping medications
Do not stop taking any medicine that has been prescribed for you without first checking with your doctor or healthcare professional. Stopping suddenly could make you very ill.
Treating spina bifida
The treatment for spina bifida depends on which type you or your child has.
Treating a closed spinal defect
If your child is diagnosed with a closed spinal defect, a neurosurgeon will talk with you about how best to manage it. Your child may not need surgery at all.
Treating an open spinal defect
If an open spinal defect is found before birth, you may be offered prenatal surgery. This means a surgeon operates on your baby while you are still pregnant. The surgery closes or covers the spina bifida lesion. The benefits and risks of this surgery will be explained to you during prenatal counselling.
Read more about prenatal surgery for spina bifida
If your child is not diagnosed until after birth, or prenatal surgery has not taken place, they will be referred to a specialist team.
Your child will see a paediatric neurosurgeon soon after birth. The surgeon will examine the defect and talk with you about the surgery.
If surgery is needed, it will usually be done in a specialist unit within 48 to 72 hours.
During the operation, the surgeon puts the spinal cord and any exposed tissues or nerves back into their proper place. They then close the gap in the spine and seal the opening with muscle and skin. If the defect is large, plastic surgeons may sometimes be involved too.
Surgery closes the gap, but it cannot bring back any function your child has already lost.
If your child has already developed hydrocephalus, the surgeon may:
- place a shunt during the same operation as the spina bifida surgery
- suggest watching and waiting to see how things develop
Read more about hydrocephalus
Physiotherapy
Targeted physiotherapy can help improve and maintain posture, coordination, strength and balance.
The physiotherapist may teach you exercises to do at home. These aim to strengthen and stretch the muscles.
If needed, the physiotherapist will also suggest walking aids to help with getting around.
Occupational therapy
Occupational therapists help people manage everyday tasks. They do this by finding new ways for you or your child to complete them. They can also help break activities down into smaller movements, which builds confidence.
Occupational therapists also know a great deal about the medical aids and technologies available. They can suggest the ones that would help you or your child most.
More about occupational therapy
Mobility aids
You may need a wheelchair if you cannot use your legs at all.
Other mobility aids that can help you or your child include leg braces and splints.
Treating bone and joint problems
If you or your child has problems with bone development, such as a club foot, you will be seen by an orthopaedic team. They will advise on how these problems should be managed, and they may recommend surgery.
Treating bladder problems
Some people with spina bifida have trouble controlling their bladder.
Treatment for bladder problems may include:
- medicines that help relax the bladder, so there is less urge to pass urine too often
- antibiotics to help prevent urinary and kidney infections
- urinary catheterisation to help prevent infection
- bladder surgery, either to make the bladder bigger so it can hold more urine, or to make an opening in the belly for a catheter
If you or your child has bladder problems that need surgery, you will be seen by general surgeons.
Read more about urinary incontinence
Treating bowel problems
Bowel problems, such as constipation, can be troublesome for people with spina bifida.
Treatment for bowel problems may include:
- laxatives, which are medicines that help empty the bowels
- suppositories and enemas, which are medicines placed into the bottom to relieve constipation
- anal irrigation, which uses special equipment to pump water through a tube in the bottom to empty the bowel
- antegrade continence enema (ACE), a surgery that links the bowel to a small opening (stoma) on the surface of the tummy
- colostomy, a surgery that brings one end of the large bowel out through an opening in the tummy so waste can be collected in a pouch
If you or your child has bowel problems that need surgery, you will be seen by general surgeons.
Follow-ups
After surgery, you or your child will probably have many follow-up appointments. Some of these may be with the surgeon who did the operation. You may also have appointments at special spina bifida clinics. There you will meet different specialists, including:
- neurologists
- neurosurgeons
- general surgeons
- orthopaedic surgeons
- physiotherapists
- specialist nurses
- urologists
- psychologists
- occupational therapists
- orthotists
Complications
Many people with spina bifida go on to live full and active lives, though they may need some support in managing the condition. How much help is needed depends on how spina bifida affects you or your child, as this can vary a great deal from one person to another.